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DiscussionMight have CLL: Does it come on fast?
Blood Cancers & Disorders | Last Active: Jul 9 8:45am | Replies (22)Comment receiving replies
Replies to "I was diagnosed in 2021 and my hematologist/oncologist guessed I had probably had it for at..."
I wanted to explain more about how survival has not been associated with starting treatment early. Once you have a treatment, you can become immune to that treatment and takes it off the table. Each treatment tends to eventually cause some kind of resistance in the form of mutations. With the BTK inhibitors, you take them until they stop working or side effects cause treatment to stop. Other meds such as Venetoclax are for a fixed duration. BTK inhibitors about double the risk of Richter's Transformation, a low risk about 5% lifetime risk goes up to 10% lifetime risk with treatment. Some mutations found by FISH need treatment right away, many are watchful waiting as the first step. But if one doesn't need treatment, every year improved meds and combinations are coming out that may better treat one and with no treatment-induced mutation occur. I have told my doctor I do not want treatment until there is a REAL reason to treat. Others feel differently!